Hi Teacher, You are wise to be looking into possibilities such as myeloma, especially since you have low iron! Anemia is one of the CRAB symptoms that indicate myeloma (Calcium high, Renal problems, Anemia, Bone lesions and/or fractures). At least that is a thumb nail sketch of it…early diagnosis of any cancer is a big help really.
Hi Lys2012 and Multibilly, if I could chime in on this….I personally think that there should be more attention paid to screening for myeloma at annual general health check ups. I know people who were diagnosed early since their testing included tests for blood protein.
Just as prostate, breast, uterine, colon and other cancers are routinely screened for, I think that blood cancers such as myeloma should be also. I think that other blood cancers such as leukaemia can be picked up with a CBC test (i.e. high white blood cell counts). Not sure of all other cancers, not being an oncologist myself!
iN my case the first indication was a dx of osteopenia…I WAS referred to the osteoporosis clinic in Calgary, but like any other specialized health provider, was on a waiting list. I would have been seen but I was dx'd with cancer a couple of months before the approx 8 month wait. My vertebral fractures were a tip off that all was not right and that this was not a simple case of osteopenia. Of course, at my age, women especially are prone to osteopenia (I have friends with this problem). At that time my red blood cell count was also starting to fall, although I was not anemic by a medical def'n.
A lot depends on the tests you get at your annual check up, IMHO. And of course this is age related. Certain tests are ordered for differing age groups. For example, a routine colonoscopy would be ordered after age 50. It took me about 2 1/2 years on that waiting list (I had no risk factors). Then when my turn came up I was undergoing cancer treatments, so they postponed that screening for bowel cancer for another 6 months.
I think that we have a good health care system in Canada, but you still have to be proactive and look for signs and symptoms and communicate your concerns with your doctors. You cannot just call up a specialist and refer yourself, you need a referral from a primary care physician. I think that is not the same in the US, but correct me if I am wrong!
Forums
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Could it be Multiple Myeloma?
[quote="Lys2012"] You say you are a 34 year old teacher, so that makes you around my age, I had just turned 32 when I was diagnosed, the youngest ever at the hospital I was initially treated at. Less then 1% of patients are 30 years old with this cancer, so it would be a rare diagnosis for you. That said there are quite a few young folks on the beacon living with multiple myeloma, so the stats may be changing.[/quote]
LYS2012--
I was just reading a post by you in one of the other forum topics (News--Research on infections prior to multiple myeloma diagnosis) and I was shocked by our similarities. I spent a year teaching in Taiwan (2009-2010) and had several bad ear infections while there (hadn't had ear infections since childhood). When I returned to the states, the ear infections continued--in my left ear only, always.
I ended up having to see several ear specialists and then an ear surgeon before getting an MRI (or maybe a CT scan--not sure). The surgeon said there was a soft tissue mass behind my ear drum and so I was scheduled for surgery. He ended up having to repair the torn eardrum and also did a mastoidectomy (cleaned out the infection in the air-filled spaces in the left mastoid bone). It was quite an extensive surgery. The surgery was in January of 2011. I took quite a few rounds of antibiotics and extensive rounds of strong ibuprofen.
I have basically been having on and off infections of the ear since then. I have also never felt quite right since that year in Taiwan. I am pretty much tired all of the time. It wasn't too long after the recovery from my surgery that I started to develop the rib pain--maybe 6 months later. And I have had the rib pain ever since.
Now I have a doctor who thinks it is all stress-related. Hello--I am an urban educator! Stress has been a factor since I began teaching in 2003! But what really stresses me out is not knowing what it is and not having doctors who are able to figure out what it is. I feel like they send me on a wild goose chase because they have no idea or don't believe me.
LYS2012--
I was just reading a post by you in one of the other forum topics (News--Research on infections prior to multiple myeloma diagnosis) and I was shocked by our similarities. I spent a year teaching in Taiwan (2009-2010) and had several bad ear infections while there (hadn't had ear infections since childhood). When I returned to the states, the ear infections continued--in my left ear only, always.
I ended up having to see several ear specialists and then an ear surgeon before getting an MRI (or maybe a CT scan--not sure). The surgeon said there was a soft tissue mass behind my ear drum and so I was scheduled for surgery. He ended up having to repair the torn eardrum and also did a mastoidectomy (cleaned out the infection in the air-filled spaces in the left mastoid bone). It was quite an extensive surgery. The surgery was in January of 2011. I took quite a few rounds of antibiotics and extensive rounds of strong ibuprofen.
I have basically been having on and off infections of the ear since then. I have also never felt quite right since that year in Taiwan. I am pretty much tired all of the time. It wasn't too long after the recovery from my surgery that I started to develop the rib pain--maybe 6 months later. And I have had the rib pain ever since.
Now I have a doctor who thinks it is all stress-related. Hello--I am an urban educator! Stress has been a factor since I began teaching in 2003! But what really stresses me out is not knowing what it is and not having doctors who are able to figure out what it is. I feel like they send me on a wild goose chase because they have no idea or don't believe me.
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ToughTeacher
Re: Could it be Multiple Myeloma?
Hi Teacher,
I have been diagnosed exactly three months ago (on my 39th birthday) with symptoms cropping up about three months before that. Started with some fatigue, but not as noticeable because I have a habit of pushing myself and always overcame things cos of my youthful looks and energy as people have always been shocked to hear my real age thinking I'm in my late twenties...but started slowing down and started developing lower back pain...and then rib pain (which i thought it was muscular only because of spasms along my right flank)
After a chiropractic adjustment (my first) pain just started moving around my back and lower back started getting worse (cos the adjustments I think really just tore me up while my bones were weakening). Work became unbearable (was performing like at 40% at what I was able to do with ease) just months prior. Really snuck up on me, but my multiple myeloma has been diagnosed as aggressive, so resulted in just about a month and a half period starting from a vertebrae collapse [completely missed at the event...concluded only as a strained back because only x-ray of lumbar was taken, but a slightly elevated creatinine (kidney function indicator) was noted] and complete painful agony (could not move an inch without intense spasming!!) for two weeks until I could pull myself together...and get back to work...but I just couldn't perform at my job any more. Newly acquired doctor had me follow up on kidneys...and they were in far worse shape. Lytic lesions covered my skeleton and all acute pains were from fractures. My diagnosis was triggered as a result of elevated calcium, anemia, poor kidney function...which ER hospitalist thankfully surmised and called up specialists.
I have been diagnosed exactly three months ago (on my 39th birthday) with symptoms cropping up about three months before that. Started with some fatigue, but not as noticeable because I have a habit of pushing myself and always overcame things cos of my youthful looks and energy as people have always been shocked to hear my real age thinking I'm in my late twenties...but started slowing down and started developing lower back pain...and then rib pain (which i thought it was muscular only because of spasms along my right flank)
After a chiropractic adjustment (my first) pain just started moving around my back and lower back started getting worse (cos the adjustments I think really just tore me up while my bones were weakening). Work became unbearable (was performing like at 40% at what I was able to do with ease) just months prior. Really snuck up on me, but my multiple myeloma has been diagnosed as aggressive, so resulted in just about a month and a half period starting from a vertebrae collapse [completely missed at the event...concluded only as a strained back because only x-ray of lumbar was taken, but a slightly elevated creatinine (kidney function indicator) was noted] and complete painful agony (could not move an inch without intense spasming!!) for two weeks until I could pull myself together...and get back to work...but I just couldn't perform at my job any more. Newly acquired doctor had me follow up on kidneys...and they were in far worse shape. Lytic lesions covered my skeleton and all acute pains were from fractures. My diagnosis was triggered as a result of elevated calcium, anemia, poor kidney function...which ER hospitalist thankfully surmised and called up specialists.
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StandingTall - Who do you know with myeloma?: Me! yay!!
- When were you/they diagnosed?: Sept. 2013
- Age at diagnosis: 39
Re: Could it be Multiple Myeloma?
I am still waiting to get in to my doctor's office to have the CMP blood work done. As of Friday, I started having pain and tightness in my mid-back, on my spine, right between my should blades, and almost the feeling of a stiff neck. I had shooting pains down my spine making it hard to walk on Saturday night. I have been taking Advil to calm the pain. It has been hard to bend forward to pick things up, etc.
The pain in my side has also increased, and I have pain in the tips of my left fingers. I also got a strange shooting pain in my foot the other day while teaching, and I couldn't walk on that leg without the pain. It eventually went away, but now my ankle is quite sore.
Has anyone had similar issues?
The pain in my side has also increased, and I have pain in the tips of my left fingers. I also got a strange shooting pain in my foot the other day while teaching, and I couldn't walk on that leg without the pain. It eventually went away, but now my ankle is quite sore.
Has anyone had similar issues?
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ToughTeacher
Re: Could it be Multiple Myeloma?
[quote="ToughTeacher"]I am still waiting to get in to my doctor's office to have the CMP blood work done.
Hey There Tough Teacher,
Please be clear that I only suggested looking at your metabolic panel and CBC as a source for a "possible hint" about what "may" be going on. I made this suggestion based on the assumption you already had a recent metabolic panel and CBC in hand so that you could peek at something while you wait to get more specific tests for myeloma. The metabolic and CBC tests by themselves are no substitute for the standard battery of multiple myeloma tests and may not even provide one with a clue even if that person does have multiple myeloma.
Just want to set appropriate expectations here.
Best of luck.
Hey There Tough Teacher,
Please be clear that I only suggested looking at your metabolic panel and CBC as a source for a "possible hint" about what "may" be going on. I made this suggestion based on the assumption you already had a recent metabolic panel and CBC in hand so that you could peek at something while you wait to get more specific tests for myeloma. The metabolic and CBC tests by themselves are no substitute for the standard battery of multiple myeloma tests and may not even provide one with a clue even if that person does have multiple myeloma.
Just want to set appropriate expectations here.
Best of luck.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Could it be Multiple Myeloma?
When I asked for a copy of my most recent labs, I was assuming I would be picking up a copy of the CBC and CMP. So, I was actually surprised that my PCP hadn't done any kind of metabolic panel recently. Therefore, it makes more sense that they would deem the pain as being all in my head since they really hadn't done any recent legwork to figure out the mystery. It would have been much easier and cheaper, in my opinion, to have done the blood work before ordering the bone scan, or at least co-currently.
It also would have made more sense to do a plain x-ray before the bone scan. But the osteopathic doctor was only doing the bone scan to eliminate the notion of it being bone metastasis. To me, this seems like such a "narrow" test considering the symptoms are from an unknown cause.
So...should I request the whole battery of tests? Or just stick with the CMP?
It also would have made more sense to do a plain x-ray before the bone scan. But the osteopathic doctor was only doing the bone scan to eliminate the notion of it being bone metastasis. To me, this seems like such a "narrow" test considering the symptoms are from an unknown cause.
So...should I request the whole battery of tests? Or just stick with the CMP?
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ToughTeacher
Re: Could it be Multiple Myeloma?
I assume you have insurance that will cover most of this? Assuming your insurance does cover it , I would get the full battery of lab tests ordered by a hematologist, preferably a myeloma specialist. That way, there won't be any more guessing and you will have somebody that can really interpret the results correctly. My insurance lets me go directly to specialists like hematologists without a referral from my PCP, but I have no idea how your insurance works.
The normal battery of lab tests below includes a metabolic panel, CBC, etc.
My suggestion would still be:
1. If your are going to get some lab tests and insurance covers it, get the full battery of multiple myeloma serum and urine tests (see Laboratory Tests here http://myeloma.org/ArticlePage.action?tabId=1&menuId=322&articleId=3177&aTab=-1 )
2. If #1 is positive for some stage of multiple myeloma, then you would want to get a PET/CT scan and you would get a bone marrow biopsy as well.
3. If #1 is negative and you still suspect multiple myeloma, you would still get a PET/CT and/or bone marrow biopsy to see if you had non-secretory form of multiple myeloma (this only happens in about 5% of multiple myeloma cases, but it happens as it obviously did to JProesch).
The normal battery of lab tests below includes a metabolic panel, CBC, etc.
My suggestion would still be:
1. If your are going to get some lab tests and insurance covers it, get the full battery of multiple myeloma serum and urine tests (see Laboratory Tests here http://myeloma.org/ArticlePage.action?tabId=1&menuId=322&articleId=3177&aTab=-1 )
2. If #1 is positive for some stage of multiple myeloma, then you would want to get a PET/CT scan and you would get a bone marrow biopsy as well.
3. If #1 is negative and you still suspect multiple myeloma, you would still get a PET/CT and/or bone marrow biopsy to see if you had non-secretory form of multiple myeloma (this only happens in about 5% of multiple myeloma cases, but it happens as it obviously did to JProesch).
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
Re: Could it be Multiple Myeloma?
Well, I finally got some blood work back from my doctor...geez--the medical world is sometimes a slow and frustrating place!
Update...the rib pain is getting worse and I now have pain in my shoulder and scapula and down my left arm and into my ring and pinkie fingers. The osteopathic doctor I see thinks I have thoracic outlet syndrome and he believes it is unrelated to the ribs. I disagree.
So, the blood work:
Protein Total = 7.2 (6.4-8.3)
Albumin = 4.7 (3.5-5.2)
*A/G ratio = 1.9 (high) (0.9-1.6)
ESR = 29 (0-30)?
ANA = positive 1:80 with a speckled pattern
I got the copies of the labs today and see my doctor to discuss them on Friday.
Is the high A/G ratio significant in multiple myeloma?
Does the ESR seem high for a 34 year old woman?
Is ANA at all related to multiple myeloma?
Update...the rib pain is getting worse and I now have pain in my shoulder and scapula and down my left arm and into my ring and pinkie fingers. The osteopathic doctor I see thinks I have thoracic outlet syndrome and he believes it is unrelated to the ribs. I disagree.
So, the blood work:
Protein Total = 7.2 (6.4-8.3)
Albumin = 4.7 (3.5-5.2)
*A/G ratio = 1.9 (high) (0.9-1.6)
ESR = 29 (0-30)?
ANA = positive 1:80 with a speckled pattern
I got the copies of the labs today and see my doctor to discuss them on Friday.
Is the high A/G ratio significant in multiple myeloma?
Does the ESR seem high for a 34 year old woman?
Is ANA at all related to multiple myeloma?
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ToughTeacher
Re: Could it be Multiple Myeloma?
I am new to this site & multiple myeloma testing/results. I am familiar with your ANA test though. A positive ANA can indicate autoimmune disease (Lupus, which I have) or other autoimmune issues. In researching online in looks like it can be related to cancer as well. I'll be curious to see others answer this question.
I wish you luck in finding the answers you need for a diagnosis & treatment.
Bren
I wish you luck in finding the answers you need for a diagnosis & treatment.
Bren
Re: Could it be Multiple Myeloma?
RE: "ToughTeacher" Well, I finally got some blood work back from my doctor...geez--the medical world is sometimes a slow and frustrating place! ....
Did you get an SPEP test or any of the other tests for multiple myeloma outlined earlier in the thread? I would suggest not trying to extrapolate to a diagnosis of multiple myeloma from the tests you outline here.
Did you get an SPEP test or any of the other tests for multiple myeloma outlined earlier in the thread? I would suggest not trying to extrapolate to a diagnosis of multiple myeloma from the tests you outline here.
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Multibilly - Name: Multibilly
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Smoldering, Nov, 2012
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